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Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS

Author

Listed:
  • Sonya Hiremath

    (Victoria Hospital Kirkaldy, NHS Fife, Kirkcaldy KY2 5AH, UK)

  • Montserrat Doukrou

    (St Bernard’s Hospital, Gibraltar Health Authority, Gibraltar GX11 1AA, UK)

  • Halina Flannery

    (University College London Hospitals NHS Foundation Trust, London NW1 2BU, UK)

  • Catherine Carey

    (University College London Hospitals NHS Foundation Trust, London NW1 2BU, UK)

  • Anna Gregorowski

    (University College London Hospitals NHS Foundation Trust, London NW1 2BU, UK)

  • Joseph Ward

    (UCL GOS Institute of Child Health, London WC1N 1EH, UK)

  • Dougal Hargreaves

    (School of Public health, Imperial College London, London SW7 2AZ, UK)

  • Terry Yvonne Segal

    (University College London Hospitals NHS Foundation Trust, London NW1 2BU, UK)

Abstract

Purpose of the study: There is limited published data on treatment or outcomes of children and young people (CYP) with moderate or severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Here, we describe outcomes of moderate and severe ME/CFS in CYP treated in a tertiary adolescent service. This information is useful when planning services for CYP and families affected by moderate/severe ME/CFS and to guide future management trials and commissioning decisions. Study Design: A retrospective review was conducted of medical records of the 27 CYP who received ward-based treatment in 2015. Notes were retrospectively reviewed to assess progress in four markers of wellbeing over the period of treatment: (i) mobility, (ii) education, (iii) sleep and (iv) involvement in social/recreational activities. Results: A total of 23/27 (85%) showed improvement in one or more domains over their period of ward-based therapy. 19/27 (70%) of patients showed improvement in physical ability. In 15/23 patients (65%), there was an improvement in ability to access education, in 12/24 (50%) sleep improved, and 16/27 (59%) demonstrated an improvement in socialising/ability perform recreational activities. Conclusion/Implications: A multidisciplinary hospital-based rehabilitation programme for moderate and severe ME/CFS was associated with improvement in at least one area of wellbeing in 85% of the CYP we reviewed. These data may be used as a baseline to evaluate the impact of other models of delivering care for this patient group. It may be useful when considering other groups such as those affected by Post-COVID Syndrome.

Suggested Citation

  • Sonya Hiremath & Montserrat Doukrou & Halina Flannery & Catherine Carey & Anna Gregorowski & Joseph Ward & Dougal Hargreaves & Terry Yvonne Segal, 2022. "Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS," IJERPH, MDPI, vol. 19(20), pages 1-13, October.
  • Handle: RePEc:gam:jijerp:v:19:y:2022:i:20:p:13608-:d:948209
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